Disability, co-production, journalism and ‘nothing about us without us’

A few months ago Mosaic Science magazine, which is published by the Wellcome Trust, asked me to look at sexuality and disability – how, in essence, disabled peoples’ access to intimacy is sometimes hindered, sometimes forbidden and sometimes mocked. I feel really grateful that I worked on this project – but it couldn’t have been done in the way I wanted it to be done without the help and support of disabled friends and allies, and also a shift in the way in which I do my own journalism. This has changed over the last seven to eight years, as I have come to understand the concept of ‘co-production’ and the resonance of ‘nothing about us without us’. Defining those terms, loosely – as co-production relates to journalism, it means that journalists keep open lines of communication with (in this case disabled people, but it could mean, say, Romani people, or any other marginalised group that often doesn’t get fairly represented in the media). Disabled people offer feedback on the work as well. It’s a two-way process, and I think that journalism is often improved in the process, without, of course, endangering the principle of free speech. “Nothing about us without us” was coined by disability activists during the struggle for civil rights but has since been used by other groups – and, again, for the media, is a useful concept. If you are writing about a group – particularly one that is marginalised and discriminated against – it’s vital that you involve the community in the process.

But first, a bit about me…and where I fit in to the narrative.

I rarely write about my own experiences of pain and impairment (I never write about those in my own family in any detail, because they are not my own), but recently I have written a bit more about my long-term neurological condition, relatively severe and chronic migraines, as I realise, more and more, that it has affected how I live my life, constrained either by pain, or the management of it. I first had a migraine when I was 12 or 13, and was entering puberty. Being adopted, nobody else in my family had any experience of migraines and my mum thought I had a headache. I was in so much pain that I actually wrote her a farewell letter that night – I thought I was going to die from the pain in my head. She really wasn’t to know – it was only later, reading the account of migraineurs, collected by the great Oliver Sacks, where he recounts tales of migraineurs who felt as if their head would split open that I realised that this was a common, if unpleasant experience. It’s now relatively well managed with epilepsy medication (odd, but true) and I’m looking forward to the menopause with excitement (I know that sounds a bit weird) as many women report that their migraines cease after the menopause.

Migraine is my first ‘black cat’ (I’m not so much of a dog person). Melancholy is my second – perhaps, again, linked back to that childhood experience of being adopted. When I finally found my Iranian birth father, decades after searching for him, and saw that broad, generous smile on his face, something lifted – a childhood and early adult melancholy (you can call it depression if you want) that I had lived with for so many years. It comes back sometimes and my family laugh and say it’s linked to the Iranian, poetic, over-dramatic side of me. That may be true.

I don’t mind my two black cats – I’ve lived with them for so long that we are really quite comfortable with each other. We’ve settled into a rhythm with each other, and they have shaped my existence. I wonder, sometimes – who would I be – who will I be – if the migraines do leave, after menopause? I am accustomed to never going anywhere without medication, avoiding bright lights and loud noises. Those habits have shaped my identity, so what happens when I don’t need them any more?

So when I write about impairment, and long -term conditions, I hope it is with some knowledge and empathy with my fellow-travellers. I think I haven’t written about it much because my own life is OK  – as I said, I have gotten used to my own black cats. But I do believe that you should always involve those who are party to a story in the making of the story, as much as possible. And you should build capacity – so often, when I write on a subject touching a particular community, I ask to write something (or make a film) with someone from the community, rather than just work alone. The next time around, I might not be necessary at all. Co-production takes time – it should mean working with people, discussing and wrestling with ideas, being challenged and then getting somewhere new with the piece of work. It’s still your work but it’s somehow shaped by those who are part of that story, in a much more authentic way.

To end, I think that the phrase: “Nothing about us without us” should be carved on the heart of every good journalist. It makes good business sense – fewer complaints – if you want to see it in those terms. But, more importantly, it’s just the right thing to do.


Treasure Island, Jabberwocky and The Day After (They Went Off on One): three shows in a week

Like most Londoners, I suspect, I don’t actually get to the theatre that often but this week was unusual. I saw three performances, ranging from Treasure Island at the National Theatre, Jabberwocky at the Little Angel Puppet Theatre in Islington and, last night, The Day After (They Went Off On One).

The first was for a family celebration, so we had with us family members ranging from nearly 80 down to 12, with a professional musician along for company. I was a bit nervous about the show. The reviews have been a little mixed although most have been positive, and I thought it might fall between two stools for the family – my parents might find it unfaithful to the book and dismiss it, and my teen and pre-teen find it childish. The muso might hate the music. Everyone, luckily, found it entrancing, particularly the extraordinary set design, cross-gender acting, the sea shanties by John Tams and other music by Dan Jones, and the adaptation of the book that lifted it through history and kept it alive for young people today. Without giving too much away, when the staging revealed glittering tunnels at one point, my teenage daughter gave us a thumbs-up. High praise indeed.

Next evening I went along to catch Jabberwocky, on one of its last nights before it finishes up at Little Angel. I should say that I’m linked to Little Angel – they have developed one of my picture books, Fussy Freya and the Fabulous Feast, through the Hatch programme and my book, Rosie gets the Plot has been on a limited schools tour with them, two years running. I’m a big fan of puppetry (not just in the UK, having visited puppeteers working in Iran). I wanted to see how Little Angel had revived its successful 2004 production of Jabberwocky, directed by Steven Tiplady, who returns for this production.  

If you can catch this frightening, surreal, fantastical show, in its last couple of performances before it ends, do. The director uses all the staging possible at the Little Angel – the famous marionette bridge, giving the impression of flying puppetry, rod puppetry, table-top work and even some big screen projection at the end, reminding me of the Little Angel production of The Tempest in tone. The music, by Hannah Marshall and Ben Glasstone is good, but the big bow goes to the four puppetteers: Mandy Travis, Stan Middleton, Sarah Wright and Nele De Craecker, at the height of their craft. My only caveat would be that in a show with so few words, ten minutes could, perhaps, have been shaved off in the middle. But it’s a magical experience, and the audience clearly loved it.

And thence to yesterday: a bleak, but authentic snapshot of the lives of two young Londoners, The Day After (They Went Off On One), written by award-winning young playwright Miran Hadzic. ‘He’ is unemployed, and hoping for that one phone call from a company that will take him one, rather than the hundred rejection letters he receives. ‘She’ is working in an office job and losing all hope. They meet, come together for one night, but then what? I went to this with an old university friend and her mother. Afterwards, we were talking about the sense of anomie, or social breakdown in the play, and how bleak it was, but agreed it was true enough, now. If there are two groups of people who have lost out in the last ten years, economically, it is young people and disabled people. Young people, the people I and my friend once were, don’t have the life chance we had when we left college. The city that welcomed us with at least half-open arms, where we found work, made bonds, must seem a harsh place to live – so harsh that some young Londoners feel pushed towards some very stark choices. If you can see Hadzic’s two-hander, ably acted by Ruby Thompson and Todd James, directed by Juliet Knight, produced by Caroline David, do go. The Vault, where it’s put on, is worth a visit in itself.

All three of these plays I watched this week, I reflected, looking back, have central characters, essentially mired in poverty and loneliness, attempting to find a way through and out through force of will. Jim Hawkins, in Treasure Island, has a crew, granted, but is isolated because of his age and the loss of his father (not present in this version). The youth in Jabberwocky sets out, alone, on his perilous quest to slay the beast and return with its head – although of course it is all wrapped around in nonsense, and is a story within a story. In The Day After (They Went Off On One) London and the economic conditions it imposes on its young citizens has pushed the two young characters to the edge of despair. Can they find something within themselves that resists?

My week of theatre has been a fascinating one – and not expensive either (important!). We booked the National tickets early, and many of them were therefore relatively cheap – around £20 for good seats. The Little Angel runs a scheme for tickets on Wednesdays called £5 at 5pm. And the ticket for the Vault festival was under £10 – so although London theatre can be very expensive, it wasn’t this time around. Fringe, mainstream and independent – all in one week. London theatre appears to be diverse, interesting and in good health. Looking forward to being a very small part of it, if my play goes on school tour this year.

Remembering the Holocaust – and the disabled victims who died in the T4 programme

In this extract from my book, Scapegoat: why we are failing disabled people (Portobello, 2011), on Holocaust Memorial Day, I am sharing my analysis of how the T4 Nazi killing machine was inspired by eugenics enthusiasts in the UK and the US. It’s a grim read, I’m afraid, but important to remember why so many people died. Never again.

Extract from: Scapegoat: why we are failing disabled people (Portobello, 2011)

by Katharine Quarmby

The legitimisation of eugenic views through Europe and American ended in a logical, if horrifying outcome: the systematic murder of thousands of disabled people in Germany, after the Nazis came to power in 1933. The National Socialist Party wanted to create a pure Aryan nation, and eradicate the taint of the Jewish people (as well as homosexuals and gypsies) But a lesser known part of their moral thought was that “degenerate”, impaired Aryans should also be eliminated. In some ways what happened to Jewish people was a tragedy foretold in the slaughter of innocent disabled children and adults, used to perfect the killing technology that was then practised on the Jews. Racial hygiene, as Hitler called it, started with the social cleansing of disabled people.

The artist, Liz Crow, has spent the last two years investigating the process that lead up to what was known as the T4 killing programme, for her art installation, Resistance. She has identified a systematic “softening up” of the population so that they would be prepared for the programme.

One part of that campaign was to open asylums to the public (as in the Victorian freak-shows), to promote the racial hygiene laws. Thousands visited in the mid 1930’s, including many members of the SS. Each tour, Liz Crow says, “culminated in a lecture illustrating, via the inmates, symptoms and the necessity for eugenic measures.”

Another strand of the campaign was through film and posters, stressing the cost of disability (similar to the less systematic, but no less brutal campaign in the US). One example she has found, from a sequence in a Reich propaganda ministry film, shows disabled people lying in cot beds, with the strap line: “Life only is a burden”. Another, which combines the Nazi attitude towards minority ethnic groups and disabled people, is of a film of a black man holding out a begging bowl, with the strap-line: “Mentally ill negro English, sixteen years in an institute costing 35,000 Reich marks.” As Liz Crow comments: “what happened to this (disabled) community served as a prototype for everything that came later….Had people intervened at that point, presumably, what came next would have been, in some way, different…disabled people were the guinea pigs for the next phase.”

The first law that the Nazis passed on coming to power was the Law for the Prevention of Genetically Diseased Offspring, instituted on July 14, 1933. Those with deafness, schizophrenia and other “malformations”, such as learning difficulties were prevented from breeding by sterilisation. The law was based on the laws functioning in Chicago, drafted by Henry Laughlin. Indeed, there was much admiration in 1936 of Nazi doctors for American eugenicists – even awarding one an honorary doctorate.

Hitler and other leading Nazis were also much influenced by Sparta, where he admired “’the exposure of sick, weak deformed children, in short their destruction, was more decent and in truth a thousand times more humane than the wretched insanity of our day which seeks to preserve the most pathological subjects.” Nazi propaganda against disabled people increased, labelling them “unworthy of life”, “useless eaters” and highlighting their burden on society in print and films. Hitler’s Strength through joy campaign prioritised getting rid of the “syphilitics, consumptives, hereditary degenerates, cripples and cretins”. He wrote in Mein Kampf that “the lame and the defective are a scourge on humanity”.

The decision to eradicate disabled children started with Gerhard Kretschmar, and accelerated shortly afterwards, apparently when other families with disabled offspring also petitioned Hitler for permission to kill their children (although some German writers were advocating this solution as early as 1920). It is estimated that at least 5000 children, from newborn babies up to juveniles, were murdered. Some were starved, others gassed.

In July 1939 planning of the T4 programme (so-called after the street address in Berlin where it was co-ordinated) of mercy killings began. An experimental gassing procedure was carried out in the winter of 1939, and the Reichs-Committee for the Processing of Serious Genetic Diseases was also formed that year, collecting data on infants and ‘deformed newborns”. German doctors took part voluntarily in the programme, and the earlier, related programme of sterilisation. The German paediatrician, Hartmut Hanauske-Abel, who has examined many of the official documents relating to both programmes, suggests that they did so because they were convinced of the rectitude of eugenics, the programme was profitable for them and it released corpses for medical experimentation. (When he first published his findings in the Lancet in 1986, he was suspended from practising as a doctor in Germany. He later won an appeal against his suspension. )

He writes about the programme thus: “The practical experience obtained in the killing hospitals of T4 provides the core for the annihilation technology of the death camps, often implemented by the same technical and medical personnel.” He concludes: “Changes which today are interpreted as causing the downfall of the German medical community were at that time warmly welcomed by the widest segments of that highly educated biomedical and scientific elite.”

One nurse involved in the children’s killing programme, at the Hadamar facility, in northern Germany, one of the six institutions where disabled people were murdered, Chief Nurse Irmgard Huber, said at her trial in 1947: “The lives…are just as valuable as my life, but I couldn’t change anything there. I didn’t have any say. I couldn’t report anything. I avoided the matter.” Instead, she distributed sweets to the children before they went to the gas chamber.

No-one abroad seemed much interested – except other euthanasia enthusiasts.
In 1939, when Germany started to practice euthanasia against disabled children and adults, one officer in the American Eugenics Society commented it showed “great courage”. Indeed, it is estimated that by 1941 the numbers of those sterilised in the US had reached nearly 36,000. One doctor, Joseph Dejarnette, a doctor from the state of Virginia, commented that “the Germans are beating us at our own game.” In 1942 an article in the journal of the American Psychiatric Association called for the killing of all “retarded” children over five.

Hitler signed the order to start killing disabled adults on September 1, 1939, giving permission for those who were “incurable” to be “accorded a mercy death.”

Grey buses, with blacked-out windows, would arrive outside villages, local asylums and hospitals to take disabled people away. They were known to children as “the murder box” and mothers would frighten their children, saying that they would be taken away in them if they were naughty.

By the end of the war it is thought that around 200,000 disabled citizens had been murdered, among them the insane, the disabled, the tubercular and the retarded, as the Nazis called them.

The killing, one writer, Hugh Gregory Gallagher, commented, was methodical and scientific. “What was interesting and important about the killing program is not the mad-dog killers, but rather the careful, orderly and quite medical manner by which the full Germany medical and scientific establishment proceeded to kill its patients over a period of years.”

One witness recalled that when the killing first started, beds were made with fresh linen and warm blankets. When people arrived to be killed, they were given hot coffee and warm rolls. Of course we will never know whether this was genuine compassion for their fate, or a desire to make the killings easier to achieve. Soon, however, the numbers of those due for killing rose and the system became stressed. The Nazis started to reuse coffins (by designing them with a flap that opened in the bottom to allow the corpse to fall out) and started to dig mass graves, especially for children.

Some churchmen remonstrated. The Bishop of Limburg protested in 1941, writing to the minister of justice: ‘the citizens of Hadamar watch the smoke rise out of the chimney and are tortured with the every-present though of the poor sufferers’. Another, the bishop of Paderborn, said “among those unhappy beings who are destined to be killed or who have already been killed, there are many who aside from partial disturbances are mentally completely clear and who know what is going to happen to them.” However, one influential Catholic, Joseph Mayer, became an apologist for the Holocaust, writing: “moral law applies only to the mentally normal, rational individuals. Mental patients do not belong in the moral order, neither as subjects nor in terms of implementation.” Later he prepared a report saying that there were reputable moral arguments for and against sterilisation on both sides.

Before long, the regime was even killing World War One veterans and even shell-shocked veterans fresh from the Western front. However, this policy was short-lived, partly because it affected troop morale.

There were poignant scenes. In one village, Absberg, the villagers and abbess protested against disabled residents of the abbey being taken away in 1940. The abbess said a special mass for them, and one eye-witness reported: “They were seen as stirred up, like animals”, and refused to go. One woman said “I don’t want to go.” The people of the town gathered, and waved goodbye to their friends causing wide-scale disgust as the news spread. In another village, not far away, in Bruckberg, those who were about to die visited almost every house in town to say goodbye.

But the Absberg and Bruckberg protests, such as they were, did have an effect. The secret of the grey buses was secret no longer. The villagers of Absberg protested to their Bishop, Von Galen, who thundered from his pulpit that what was happening must stop. T4 was cancelled officially shortly afterwards, in August 1941. But unofficial killing continued thereafter – in what is known as the “wild phase” of the programme.

The banality and playfulness of the evil often perpetrated against disabled people, is best exemplified in what Hugh Gregory Gallagher claims happened when the staff of Hadamar were assembled, in the midsummer of 1941, to celebrate the 10,000 murder in the institution. The staff celebrated the anniversary with beer and wine, in the same room where the people had been put to death. The body of the murdered man was adorned with flowers and laid on a gurney, decorated with small Nazi flags. The hospital book-keeper, Mr Merkle, in the words of one witness, “turned his collar about, put his coat on backward, and intoned a burlesque eulogy of the deceased insane person.”

The physicians who participated in the euthanasia campaign have mostly never been successfully prosecuted. They did not stand trial at Nuremburg, unlike other Nazi mass murderers because their crimes had been, in the main, perpetrated against other German citizens, rather than foreigners. As a result, Professor William Seidelmann writes, “Absent from the dock were the leaders of the medical profession of the Third Reich, in particular the academic and scientific elite. It was this elite who legitimised the devaluation of human life and set the stage for medical crimes—crimes in which leading academics and scientists were either principals or accomplices.” There may have been another reason, too, for the paucity of trials. Liz Crow argues that the Nuremburg prosecutors were clear in their minds that what happened to the Roma, the Jews and other groups was abhorrent. “But they were confused about whether killing disabled people was a public service. The prevailing attitudes about disabled people, that they were inferior, pitiable and burdensome, defined their judgement.”

Back in the UK, the return of the war wounded did increase public sympathy for the physically disabled and those with shell-shock and other mental health conditions. Churchill, too, had mellowed. One of his last acts as a war-time Prime Minister was to commit the so-called “mental millions” to support those returning from war, with their nerves in shreds. One third of servicemen invalided out of the army had been discharged on mental heath grounds. Disabled people had gotten angry at last: veterans from both world wars lobbied for the right to work through organisations such as the National League for the Blind and Disabled, holding sit-ins to force government to ensure their right to employment.

The end of the war did achieve two things for disabled people – it confronted Britain and America with the ugly reflection of their own ideas in Nazi Germany – and it created more sympathy for some categories of disabled people – though not all within British society. The many disabled war veterans, in particular, normalised physical impairment for many. And the end of the war was also the beginning of the end for the institutions – but with numbers reaching a record 150,000 in 1950, it was to prove a very long journey.
As for Gerhard Kretschmar, his identity was concealed from us for over fifty years, known only as child K in official terminology. His short and miserable life was hidden in the Stasi files in East Germany, and only came to light when a German historian, Ulf Schmidt, unearthed it, after the fall of the Berlin Wall and wrote about him in his biography of Hitler’s physician, Karl Brandt. Gerhard’s murder was recorded, not as euthanasia, but as “heart failure”, like so many others. He, of course, like those victims of mercy killings today, did not consent to his death. Few know of Gerhard’s life, or death. If it had not been for Ulf Schmidt we would not even know his name. Many of the other victims of T4 remain nameless even now. Astonishingly, those responsible for murdering their “patients” could escape responsibility – by claiming that the patients they had killed had a right to medical confidentiality.
The last victim of T4, Liz Crow says, was a four year old disabled boy, Richard Jenne. “The American forces moved into Bavaria, the last area they liberated, and they put a protective ring around the local institution for disabled people, not knowing about T4. He was killed. Four weeks after peace was declared.”

Too many of the victims of T4 remain nameless. And naming the dead, and what was done to them, matters. I believe that Gerhard’s story, Richard’s story, and those of other disabled people murdered like them, should be known and taught in British schools. They were human beings, not beastly burdens who should be put out of their misery. We owe it to them to remember them, and to give them their rightful place in our common history. For if we do not learn from history, we cannot guarantee that it will not be repeated.

Remembering the Holocaust – and the Roma who died amongst the many victims

I have been very moved by the many wonderful contributions to Holocaust Memorial Day, all around the world.

Here’s my contribution – a short extract from my book, No Place to Call Home: Inside the Real Lives of Gypsies and Travellers, published by Oneworld Publications in 2013. It contains a passage about the lesser known history of the Roma who perished during the Holocaust, along with all the other victims. I will also be publishing an extract from my book, Scapegoat: how we are failing disabled people (Portobello, 2011), today, which has a short section on the disabled people who were victims of the Holocaust, under the T4 killing programme.

Extract from No Place to Call Home: Inside the Real Lives of Gypsies and Travellers (Oneworld Publications, 2013)

by Katharine Quarmby

 No reproduction without permission from publishers

The hatred of the Roma people, intense enough in the UK, was magnified in mainland Europe. It was impossible to watch the treatment of the Roma on the continent without fear for what fate they might face should they ever be forced to leave the coun- try. Those who arrived in Britain from Europe as refugees – for example, in 1904 the ‘German Gypsies’ and then in 1911 and 1913 the ‘Gypsy Coppersmiths’ were treated with hostility and suspicion. The identity of English, Welsh and Scottish Gypsies, especially, was shaped by the Holocaust, or, as it is known by the Roma people themselves, the Porrajmos, or the Devouring (a phrase coined by the Romani scholar Ian Hancock).

Manfri Frederick Wood, an English Gypsy who fought in the Fifth Airborne Division (and who later became the first treasurer of the Gypsy Council), claimed to have been one of the first Allied soldiers to enter Belsen concentration camp after liberation. ‘When I saw the surviving Romanies, with young children among them, I was shaken. Then I went over to the ovens, and found on one of the steel stretchers the half-charred body of a girl, and I understood in one awful minute what had been going on there,’ he recalled. Charles Smith, an English Romani Gypsy and one-time chair of the Gypsy Council, later visited Auschwitz with a small delega- tion of Gypsies. ‘We stood there, a group of English Gypsies from England, there in the gas chambers. I felt sort of honoured to be there – all of us survivors of a Gypsy Holocaust that had been


going on for a thousand years continuously … Auschwitz being just a peak period in Gypsy genocide.’60

That sense of a collective, centuries-long experience of perse- cution remains strong today. The emotional scars also run deep, perhaps partly because this part of the Holocaust has never received the same amount of attention as the extermination of Jewish people. Yet Roma and Sinti (the second largest nomadic group) people were also judged to be racially inferior by the German authorities. They too were interned, subjected to forced labour. Many were murdered.

Historians estimate that the Germans and their allies killed around twenty-five per cent of all European Roma.61 Of the slightly less than one million Roma believed to have been living in Europe before the war, at least 220,000, and possibly as many as 500,000, are estimated to have been killed.62 According to the US Holocaust Museum, German military and SS-police units allegedly shot at least thirty thousand Roma in the Baltic states and elsewhere in the occupied Soviet Union; Einsatzgruppen and other mobile killing units were targeting Roma at the same time that they were killing Jews and Communists. In occupied Serbia, German authorities are known to have killed male Roma in shooting operations during 1941 and early 1942. Women were murdered, along with children, in mobile gas vans in 1942.

In France, between three thousand and six thousand Roma are thought to have been interned and some were shipped to German concentration camps. Romanian military and police officials deported another 26,000 Roma to Transnistria, a section of south-western Ukraine placed under Romanian administration for just two years, 1941 and 1942. Thousands of those imprisoned starved or died from disease. The Ustashe, a separatist organisation that had taken charge in the power vacuum in Croatia, exhibited particularly chilling efficiency in its campaign to eradicate the Roma. Almost all of the Roma population of Croatia, around 25,000, were murdered, most at the concentration camp of Jasenovac.

Many Roma were also incarcerated by the SS at Bergen-Belsen, Sachsenhausen, Buchenwald, Dachau, Natzweiler-Struthof,


Mauthausen and Ravensbrück. In December 1942, Himmler ordered the deportation of Roma from the so-called Greater German Reich. Most went to Auschwitz-Birkenau, where the camp authorities housed them in a special compound that was called the ‘Gypsy family camp’. Altogether, 23,000 Roma were deported to Auschwitz. Conditions in the Roma compound (poor sanitation, starvation levels of rations, for example), encour- aged the swift spread of deadly diseases – typhus, smallpox and dysentery among them. Epidemics severely reduced the camp population. At least 19,000 of the 23,000 nomadic people sent to Auschwitz died there.

Perhaps the cruellest part of the Roma experience, however, was the appalling series of medical experiments carried out by the infamous SS Captain Dr Josef Mengele and others, on many young Roma children. He had received authorisation to choose human subjects for experiments from among the prisoners. Mengele chose twins and children of restricted growth, many of them drawn from the Roma population imprisoned at the camp, as his sub- jects.64 Around 3,500 adult and adolescent Roma were prisoners in other German camps, and medical researchers included some Roma for studies that exposed them to typhus and mustard gas, or gave them salt water as their only source of liquid. The Roma were also used in sterilisation experiments.

After the Second World War, discrimination against Roma continued throughout Central and Eastern Europe, beginning with the great reckoning of the horrors of the concentration camps. ‘Nobody was called to testify on behalf of the Romani victims at the Nuremberg Trials,’ Hancock noted, ‘and no war crimes reparations have ever been paid to Romanies as a people.’ There were a few mentions of the atrocities carried out against Romanies at Nuremberg, but as Grattan Puxon and Donald Kenrick point out, only six references, making up some seven sentences, in the eleven volumes of the trial transcript. For decades, the Federal Republic of Germany determined that all measures taken against Roma before 1943 were legitimate official measures against per- sons committing criminal acts, not the result of policies driven


by racial prejudice. Only in 1979 did the government change tack, by which time many of those eligible for compensation had died. Even today, neo-Nazi activity in many parts of central and Eastern Europe is targeted on Romanies, according to Hancock.

In the aftermath of the Porrajmos, the shattered community turned further inwards. ‘While in the camps, the Gypsies had been unable to keep up their customs – the Romainia – concerning the preparation of food and the washing of clothes. They solved the psychological problems by not speaking about the time in the camps … Few were interested anyway. In the many books writ- ten describing the Nazi period and the persecution of the Jews, Gypsies usually appear as a footnote or small section,’ said histo- rians Donald Kenrick and Gillian Taylor.68 In the early post-war years, news trickled out that the Nazi regime had secretly collected lists of Gypsies to target and intern if they invaded Britain. The UK government had built camps for Gypsies fighting or working at home for the war effort; these were swiftly dismantled once the war was over.69 Many British Gypsies and Irish Travellers who had served during the Second World War were left with a firm sense of determination: never again.

As Charles Smith wrote to conclude his visit to Auschwitz: ‘The thing that haunts me most was a photograph of a little girl age about ten or eleven years, hair cropped, wearing her striped cloth, looking straight into the camera, her eyes filled with tears … a picture of her will always be in my mind. I will remember. I will be vigilant. As a Gypsy I owe that to my ancestors.’


Hate crime, hate speech and Charlie Hebdo

Tomorrow Charlie Hebdo hits the newsstands. I hope I manage to buy a copy – not sure if I’ll be able to find it in London, but I’ll give it a try. We have to remember those who died  – journalists, police officers, among them a Muslim police officer, Jewish shoppers and others just trying to do their jobs, as well as those who survived, among them a Muslim supermarket worker, who protected some of the shoppers in the Jewish supermarket. Those who died are part of our struggle, to protect our right to freedom of expression, so eloquently expressed by the symbol of the pencil and pen, held aloft, though like many journalists I touch-type faster than I can write by hand…

And yet I’ve written two books that investigate hate crime and hate speech against minorities. I’ve written many articles and blogs about protecting free speech but balancing that against the rights of particularly vulnerable communities. Just last year, I was in Norway, speaking at a conference about hate speech, where far right extremist Anders Breivik murdered young Norwegians in 2011 and ignited an on-going debate about the limits of freedom of expression.

I believe it’s important that we protect free speech. It’s one of the cornerstones of our democracy. I couldn’t function without it, as a writer and journalist. After the Leveson Inquiry, when we as a profession were held in so low regard (and with some justification) it has been extraordinary and rather wonderful to see an outpouring of warmth for the principles so many journalists hold dear – holding power to account and speaking truth to power. We must be independent voices, too – as those at Charlie Hebdo were – criticising all vested interests equally. We are held accountable for our actions in so many ways – through the courts, through public opinion – and now, fatally, down the barrel of the gun. I’d be lying if I didn’t say that I didn’t fear reprisal, with some stories. Why not be honest? Publishing stories about stalkers makes it more likely you will be stalked. Publishing stories about criminals makes it  more likely they will take revenge. Of course we are afraid. I have lost sleep on many occasions, thinking that I might lose everything I have on a libel claim, or I might be physically attacked. It hasn’t happened yet, but yes, there have been a number of threats. So far, on most occasions, I have managed to get most stuff published anyway – but not one story I have spent over one year on, about ‘honour-based’ violence.

Do we lose our humanity when we write some stories? I hope not. Anything we write or broadcast may be hurtful, but it is usually not meant to be so. One has to knowingly take offence, as well as give offence. That, for me, is the core of hate speech, and why what Charlie Hebdo did, was not hate speech, it was free speech. If you mock everyone and everything equally, without one target, that is the role of the court jester. It is not targeted abuse at one specific minority (targeted hate, incitement). If you wish to take offence at a cartoon, with a gun, you are the one with hate in your heart, not the person with a pencil in the hand. #CharlieHebdo.



The missing link – perpetrator research on disability hate crime – a government failure and broken promise

In the Equality and Human Rights Commission Report, Hidden in Plain Sight, on which many of the Disability Hate Crime Network Co-ordinators served as expert advisors in a voluntary role in 2012, we pushed for and secured, with the help of allies, this core recommendation among the seven:

• We have a better understanding of the motivations and circumstances of perpetrators and are able to more effectively design interventions.

This was then elaborated on the targeted recommendations thus:

We have a better understanding of the motivations and circumstances of perpetrators and are able to more effectively design interventions
One fundamental issue in dealing with the problem of disability-related harassment, and other forms of abuse, is to understand why it occurs.
The most urgent issue is getting a better understanding of the characteristics and motivations of those who commit acts of disability-related harassment.
In addition, there needs to be more awareness of the general structures and attitudes (and the interactions between them) which give rise to the problem in the first place.
To address these issues, we recommend that:
– targeted research is undertaken in collaboration with the National Offender Management Service and local authorities in Scotland to build a clearer picture of perpetrator profiles, motivations and circumstances and, in particular, to inform prevention and rehabilitation.
– criminal justice agencies support bodies that commission research to stimulate and support studies that look into why harassment occurs in the first place and broader attitudes towards disabled people.

Put simply, this work has not been completed, two years on, although the government accepted the report from the EHRC. I believe, from many private conversations with senior figures inside the criminal justice system that the work on perpetrator research may have been started, but has stalled. Indeed the government accepted that particular recommendation in full – but none of the research promised, as far as I can establish, has been published or circulated. Our understanding of disability hate crime perpetrators remains just as low as before – in fact many people still seem to rely on my chapter in my book, Scapegoat, which analysed motivation in a small number of cases, as the only source, in 2011.

This simply isn’t good enough. With prosecution and conviction figures so parlously low, we desperately need a prevention strategy on disability hate crime. I first wrote about the need for perpetrator research in Getting Away with Murder, published in 2008, (by the charity Scope, the Disabled People’s Council and the magazine Disability Now). I followed this up with more evidence of how perpetrator research on rape, and other forms of hate crime such as race hate crime is helping to shape policy across Europe in my book Scapegoat: Why we are Failing Disabled People (Portobello Press, 2011). How many years more campaigning do we have to do before the motivations of those carrying out these heinous crimes are examined, so that we can understand them and prevent more such crimes happening in the future? Why has the government no sense of urgency about this crime? Do the lives of disabled people carry so little value to the government?

I would love Mr Cameron to prove me wrong, and actually show some energy about sorting out this problem. Once upon a time, he and Mr Osborne waxed lyrical about the Paralympics, and how wonderful disabled people were, but he and his Coalition have stayed stubbornly silent about the scourge of disability hate crime. It’s time to step up and do something positive. Implement that recommendation. Honour that promise. For the sake of the victims, survivors and bereaved families of disability hate crime.

The Istanbul Convention, the Rome Conference, violence against women and the case of Diana Kader

Rome speech on the Istanbul Convention and Diana Kader’s case, and others

The Istanbul Convention is a huge achievement. I wanted to use my experience as a social affairs journalist to explain the difference the Convention could make to the survivors of long-term and acute violence.

I have spent the last two years working with a courageous young woman, Diana Kader, who is of British Yemeni origin, on a book about her story, which will be published in the next few months. It is called Hear My Cry. I wanted to share some of her story with you today.

In the summer of 2006 Diana Kader graduated from university in Manchester, in the north of England, with a degree in Human Sciences. She was the first in her family to gain a degree and her proud parents, neither of whom can read or write but who desperately wanted their five daughters and one son to have the education they never had in rural Yemen, decided to take them back to their country of origin, on a family holiday.

For Diana and her siblings Yemen was the homeland they had never known. They were Manchester kids – but also devout Muslims, proud of their roots.
They were captivated by their homeland, and delighted to meet their extended family. But soon Diana and her sisters were being wooed. A young man from a wealthy family in central Yemen asked for Diana’s hand in marriage. Diana didn’t know him, and turned him down, with the full support of her parents.

The suitor was persistent, and eventually Diana’s father had to be very forthright to ask him to desist. But it didn’t end there.

One day, when Diana was driving alone, along a desert highway, her spurned suitor ran her off the road in a petrol tanker and tried to murder her, in a botched ‘honour’ killing.

In the ‘accident’ her pelvis was shattered, her arm and leg broken and she sustained severe internal injuries. Then he phoned her father and threatened to leave her to die by the side of the road ‘like a dog’.

Diana’s father is a hero. He pleaded with this criminal to get Diana to hospital – and to this day it is not clear why the man agreed. Whilst she was in hospital further threats were made against her. Her father had to pay bribes to airline officials to fly her back to the UK. Diana then spent three months in intensive care and nearly three years in rehab. She was told she would never walk again. It is a testament to her strength, and that of her devoted family, that she is now back at work, and walks – but has permanent disabilities and lives in constant pain.

But how did the UK support Diana, a clear victim of ‘honour’ based violence? For the campaign against her did not end in Yemen. She and her family – amongst them young children – have faced hostility, harassment, violence and intimidation from some in her own community for standing up to so-called ‘honour’ crime.
Britain, certainly, was not to blame for the fact that the Yemeni authorities did not put her suitor on trial – although he was arrested and had admitted running her over. Diana even returned in 2010 to Yemen to seek justice. But, yet again, it was denied to her.

But it was at this point that many British institutions failed Diana. Firstly, the Foreign Office failed her because it did not link her with its own unit, the Forced Marriage Unit, which supports victims such as her, even when no legal outcome can be achieved. And she was failed, in some respects, by other institutions too – particularly the local police force, as well as local and national political figures.

Every time that Diana and her family were subject to on-street harassment or an attack on their home in revenge for what happened in Yemen, it was dealt with by a different police officer in Manchester – until this year, when I raised this matter with them, and stressed that I thought she was in danger, and that a more co-ordinated approach was desperately needed.

The Convention creates a blueprint for a co-ordinated, victim centred approach for combating all forms of violence against women. One can but hope that such an approach will filter down to the police force level in individual countries and change attitudes towards survivors such as Diana, who are in such great danger from the communities in which they live. It is wonderful that the Council of Europe is leading international efforts to protect women’s human rights but we need individual police officers, MP’s and others in positions of authority to take that on board and implement it too.

I also think there needs to be a greater understanding of the wider community basis of so-called ‘honour’ based violence. I commend the drafters of the Convention for their care in wording that means that no-one can invoke an ‘honour’ defence for any kind of violence. But there does remain a focus on family members and their part in so called honour killing. Diana’s case, and others, according to the wonderful charity IKWRO, which supports women of Middle Eastern and Afghani origin at risk of violence and which is now supporting Diana, also demonstrate how a whole community can bring an almost unbearable pressure to bear on a family to enforce the ‘honour’ code. In Diana’s case her family – almost all of them – stood by her, to their immense credit. But so many families do not. How do we bring that brilliant focus of prevention in the Convention to bear in so-called ‘honour’ crimes and ease that community pressure on families who are seeking to modernize and live between two worlds?

Another invisible world – that of women experiencing domestic violence – is one explored by the Convention – to the immense credit of those working on it. As the Convention’s explanatory notes make clear, no statute can ever prevent violence occurring in the first place. But the Convention can encourage countries that ratify it to provide victims and witnesses with advice and support. For survivors of domestic violence, for example, one essential component of that is the refuge, where women can go with their children. I cannot stress how important refuges are. They save lives. According to the British charity, Women’s Aid, one in four women will experience domestic violence in their lifetime. But consider this fact: that statistic doubles for disabled women. Almost one in two disabled women will experience domestic violence at the hand of a partner, carer or family during their lifetime. Some of the violence will be what most of us recognize as domestic violence. But some will have an extra edge of cruelty – it will be adapted to the impairment of the woman. So, for instance, I have heard disabled women tell me of having their medication withheld, or, if they are wheelchair users, having the battery taken out so they cannot move. I have spoken to women with learning difficulties who have been sexually abused and deliberately targeted because they would be seen as ‘unreliable witnesses’ by the police, meaning that the perpetrators would then be more likely to get away with their crimes. There is only one refuge in the UK for women with learning difficulties. Romani Gypsy and Traveller women also experience domestic violence and require specialist support in refuges, as do other women from minority ethnic communities. So I am angry that across the UK specialist domestic violence posts are being cut. 10 specialist services were lost in the first quarter of this financial year alone and 17% of refuges closed completely since 2010 – at a time when this Convention is coming into force and has stressed how important refuges are.

But I would like to end on an optimistic note – for there are many reasons to be cheerful. I applaud the Convention’s strong focus on prevention. This focus comes into its own when it comes to stalking in particular.

I believe that the Convention could save the lives of women (and men) who are being stalked, right now, in Europe. In particular I would point to the introduction of protection and restraining orders, thus restraining perpetrators from approaching their victims. The Convention asks countries to do all they can to enforce these across borders. The criminalisation of stalking in all countries that ratify the treaty will galvanise attitudes towards this horrific crime which, as British stalking survivor and campaigner, Alexis Bowater once told me, rightly, is ‘murder in slow motion’. The countries signing up will be on their mettle – they will be monitored on their progress. As a senior police officer dealing in hate crime once told me: “If something is measured, it gets done.” So things will change for the better in Europe and that may well improve things in other regions as well.

The Istanbul Convention requires action and implementation – change – from so many people: police officers, prosecutors, social workers, housing officers and politicians – and, yes, journalists too. But, at the heart of it is the sea change that so many campaigners have wanted, for so many years: it puts the survivor, the victim, at the heart of the process. When Diana lay on the desert road in Yemen, with her attacker smiling down at her, she decided she would live and tell her tale, for the sake of her family, for the sake of other women. Every time she has been attacked since then, in her community, spat at in the street, had her tyres slashed, called a whore and a slut for the crime of working, she has had to make that commitment once again: to live and tell her tale. The Convention honours women such as Diana – in the true sense of the word. It says, I hope, that we hear her cry. Let’s take up that challenge. Thank you.